Tag Archives: anaphylaxis

I hope I make sense in this post because I’ve not had much sleep. My flippin’ neuropathy is ridiculous atm and I’m stinging and burning in equal measure – I blame the menopause but in reality it could be anything that’s set the flare off.

Anyway, I digress. Following on from my anaphylaxis post I wanted to talk about chronic reactions, including prolonged anaphylaxis which you don’t seem to hear anything about. Doctors seem to be taught that if a patient is in anaphylaxis you prescribe Benedryl and within a couple of hours the patient is good to go. I sodding wish it were that simple! For a start I’m allergic to antihistamines, and for seconds my longest anaphylactic reaction lasted for 3 weeks

It started with my nemesis – drugs. I was prescribed a new medication (I’ve reacted to so much I’ve forgotten which drug, but I suspect it was an antidepressant to help with pain and sleep). I had the usual anaphylaxis symptoms which I talked about in my anaphylaxis post, for which I didn’t even bother ringing my doctor as we had no idea at the time I had MCAS and I was either treated like I was nuts or simply having a panic attack, and I just waited for the reaction to pass. But the symptoms didn’t abate. The pounding palpitations, muscle spasms, oesophageal spasms, retching and profound exhaustion just kept on going. And going. And going. After 3 weeks of barely sleeping, barely eating and with my heart running like Usain Bolt 24/7, the pain in my chest was so bad it felt like I was being stabbed with a bread knife. At 10pm one evening I rang the non-emergency NHS number 111 and was told I needed an ambulance in case I’d had a heart attack. I knew I hadn’t had a heart attack, but was so ill I reluctantly agreed. I was carted off to hospital, in the snow, at midnight, alone and in my pjs, only for them to tell me after 6 hours in A&E that of course there was nothing wrong with my heart. No reason given for my symptoms and at 7am in the morning, in my pjs and with no money, I was discharged with no way of getting the 30 miles home. The reaction did finally settle down, but I was really unwell and mostly bedbound for 6 months afterwards – anaphylaxis and M.E. don’t make good companions.

Oh, how I wished I knew then what I know now. In particular, I wish I’d had my tryptase measured during any one of my two dozen anaphylactic reactions! These days, of course, I’m very careful to avoid my triggers and thankfully haven’t had a serious reaction since I was diagnosed with MCAS so it’s not been possible to measure my tryptase when it’s elevated. In any event, I’m not sure how I’d go about it. I live alone 7 miles from my nearest health centre and when I’m in anaphylaxis I’m fairly sure it’s not safe to drive even if I felt well enough (which of course I don’t). So how exactly would I get to have my bloods done?! Do medics who tell you to have your tryptase measured during anaphylaxis even think about the logistics of that?

On top of anaphylactic reactions, I also have chronic allergy symptoms including:

Hives, which appear randomly and which last for weeks, sometimes months on end. One of my triggers for those is stress, but it’s almost impossible to know what else sets them off. I also get random red marks, rashes and skin blisters on top of my ever-present dermographism.

Hives caused by emotional stress.

Migraines. One of my biggest triggers are my hormones, so it will be interesting to see what happens after menopause as they are currently less frequent than they used to be.

Flushing. Much better since going on a low histamine diet, but tiredness, emotions (good or bad) and over-doing it all cause me to go beetroot red. Here is me last week driving home in the car, way over-tired and with my brain function deteriorating by the second:

Sneezing. I’m mildly allergic to my dog which I’m sure doesn’t help the situation but doesn’t account for the periods of acute sneezing which seem to randomly come and go.

Itchy skin and scalp. I itch all the time, which could be down to just about anything. If it were my washing detergent it wouldn’t affect my scalp, just in case anyone was thinking that.

Nausea and colicky stomach pain. I have periods of both and can’t tie this in to any particular food.

Constant peeing. I know when I’m in a ‘good’ spell MCAS-wise because I don’t widdle every hour on the hour. I’m currently in a ‘bad’ spell and was up 3 times in the night to pee.

I have all manner of other issues like profound fatigue, brain fog, pain, muscle spasms, constipation, insomnia etc. which could be MCAS related but could also be hEDS, dysautonomia, M.E. or menopause-related – it’s impossible to separate symptoms when you have a multitude of illnesses.

MCAS knocks what most physicians are taught about anaphylaxis on the head. In addition, one of my readers brought up an important issue – that of anaphylactic reactions v anaphylactoid reactions. Anaphylactic reactions are caused by an IgE mediated event, a peanut allergy being a prime example. Anaphylactoid reactions are caused by non-IgE medicated events, and MCAS would come under that umbrella. Whether your allergy is IgE, or non IgE, mediated is however mostly irrelevant because both can cause anaphylactic shock. Despite that, I have discovered that doctors do tend to think that anaphylactoid reactions are less serious than anaphylactic reactions and when they already misunderstand MCAS or, worse, know zero about MCAS and simply think you’re hysterical or anxiety-riddled it can cause no end of problems in accessing appropriate medical care. The World Allergy Organisation recognized this and in 2018 changed the term ‘anaphylactoid’ to ‘nonimmunologic anaphylaxis’ in an effort to re-enforce the seriousness of non-IgE reactions and their potential to cause life-threatening shock.

A reaction doesn’t have to happen instantly and immediately cause you to become unconscious for it to be very serious indeed and if you have, or have had, any kind of anaphylaxis you need to make sure this is clearly stated in your medical notes. MCAS can be an escalating illness, I know mine has been, and just because your anaphylaxis has stopped at grade 2 or 3 in the past doesn’t mean it won’t progress to grade 4 or 5 in the future.

For some strange reason, it’s never occurred to me until today that some of my readers might not know whether or not they are having anaphylaxis. When I first started having anaphylaxis I had no clue that’s what it was, although I knew it was something pretty catastrophic and I genuinely thought I’d die (turns out that wasn’t an irrational fear!).

Grades of Anaphylaxis

All most of us know about anaphylaxis, if we know anything at all, is actually about anaphylactic shock, ie an acute, life-threatening allergic reaction which results in loss of consciousness and potentially death. However, anaphylaxis is a graded allergic response, which can vary in severity from mild to severe. Just to complicate matters, there is no universally agreed grading system but most anaphylaxis charts are a variant of the one below:

My experience of anaphylaxis

We are all different and in typical Jak form my anaphylactic reactions don’t conform to any of the grades in the table!

Symptom1 is a massive head rush. It feels a bit like something has exploded in my brain with a big whoosh and my whole head gets severe pins and needles. These pins and needles then spread throughout my body and explode with pain in my feet and finger ends. I know, right there and then, that I am in trouble. My brain then feels like it’s cramping, just like when you get a charley horse in your calf.

Symptom 2 is the feeling of being thumped hard in the chest, followed by a racing, pounding heart beat. This comes on only seconds after the head rush. This of course is accompanied by a rise in blood pressure, usually with at least a 30 point increase in both systolic and diastolic pressures. Note: this does not fit the usual criteria for anaphylaxis, where there is a drop in blood pressure.

Symptom 3 is facial flushing. This comes on almost simultaneously with the increased heart rate. I also have a large, blotchy red rash all over my torso.

Symptom 4 is muscle spasms. My entire body gets the cramps, my back being particularly badly affected – it can be intensely painful.

Symptom 5 is a huge adrenalin rush. I absolutely cannot sit still, and usually have to pace up and down, up and down, up and down, virtually wearing a hole in the carpet. Depending on the severity of the reaction, this has been known to go on for several hours. It is impossible to either sit or lie quietly in my bed, no matter how utterly exhausted or ill I might be.

Symptom 6 is oesophageal spasms, which lead to me retching and retching and retching. Sometimes I feel intensely nauseous, other times not. I don’t vomit, just retch to the point where I can hardly breathe.

Other symptoms include either sweating or shivering, facial pallor in addition to the flushing, needing to pass a bowel movement (though normal in consistency and not diarrhoea), needing to pee, muscle weakness and utterly overwhelming fatigue.

My reactions have never included itching (pruritus) or hives, and I’ve only had very occasional swelling (oedema) of my eyes and/or lips. I do have itching and hives on a chronic level which I’ll talk about in another post, but never as part of an acute reaction. I’ve never thankfully been rendered unconscious, though I have fainted.

As anaphylaxis is a graded response, not every reaction is severe. Yesterday, I was at a friend’s house having a brew. He’d bought some little mini chocolate fondant cakes to eat which I’d never had before, and within 5 minutes I got the head rush and some mild pins and needles. My heart started to race and my face to flush, but I was able to control my breathing, the reaction didn’t escalate and after a short while the symptoms settled down. I carried on the conversation with my friend like nothing was happening and he had no idea I was having an allergic reaction to the cake!

Triggers

Without a doubt, the trigger most likely to bring on a severe anaphylactic reaction for me is medication. Luckily I can avoid drugs most of the time but when I desperately need to take something, such as pain meds or antibiotics, I can sometimes tolerate a child’s dose, or liquids which I cope with much better than tablets or capsules. Some drugs, though, are totally off the table, including sedatives, anti-emetics (ie drugs for nausea and vomiting), anti-depressants of any variety and general anaesthesia.

Alcohol is to be avoided at all costs and is the only thing which has ever caused me scary facial swelling.

Foods high in histamine, such as cheddar cheese, tinned tomatoes (which are high in GABA, see below!) and tinned or fresh (aka days old) fish, are also off the menu as they cause instant reactions. I’ll talk about chronic reactions in my next post.

Other foods which have caused me problems seem to be fairly random, such as the iced fondants mentioned above, chamomile tea, the red jam found in cream cakes like doughnuts, paprika and cayenne pepper (but not curry or chilli powder), yoghurt (though I’m fine with other dairy, so it’s either the fermentation process or the live cultures), some chocolate (but not other chocolate). Whenever I try something knew I never have any idea how it will go and eating out is still a game of Russian Roulette.

I’ve also had anaphylactic reactions to some supplements including magnesium (including epsom salts), GABA (found naturally in tomatoes to which I also react), sublingual B12, glutamine, melatonin, valarian, lemon balm and the herbal laxative Senacot, hypromellose eye drops, massage, osteopathy, chiropracty and acupuncture.

Menstrual hormones have always caused me problems and it was starting peri-menopause in my early 40s which sent my mast cells into melt down. I am always more reactive in the week leading up to my period, and have more issues with reflux, itchy skin, insomnia, muscle cramps and migraines. Roll on the menopause is all I can say, which seems to be taking for sodding ever!

Progression

When I was a very small child, I used to get “chapped lips” in winter. Almost all my winter primary school photos show me with a huge red welt under my mouth which sometimes reached down to my chin. Then, when I was around 14, my lips started to swell if I went outside when it was cold and wet. I know that sounds completely bonkers, but the weather caused my first allergic reaction. My lips swelled to such an extent that even my GP could see the oedema, but simply couldn’t get her head around the fact it was rain that set it off. It lasted about 2 years then the swelling just stopped. I do, though, still get tingly chapped lips when it rains. As I type this we are having a storm outside and I have done nothing but cover my lips in Chapstick since the minute I got up! I never mention this to anyone……can you imagine their reaction? 😉

I had my very first acute allergic reaction at the age of 16, following spinal surgery. I suspect it was the general anaesthetic, but it could actually have been any of the other drugs used in the operation or one of the post op drugs given for pain relief. It wasn’t a full on anaphylactic reaction and was confined to my muscles, which spasmed so badly for 3 days following the op I had to be given muscle relaxant injections.

The next reaction was an ocular-gyric crisis to the drug Stemetil, which I’d been given because of a severe vomiting bug when I was 17. I was unwittingly given this drug again when I was 24 and had another severe reaction – it was this which led to me developing M.E.!

My next reaction at the age of 25 was to alcohol, which caused my whole face to swell and me to pass out. I’d always flushed after drinking alcohol but the allergic reaction came out of the blue and I have no idea what set it off. I haven’t been able to drink from that day to this – I’d kill for half a cider 😉

The next reaction was to melatonin aged 26, and is one of the scariest reactions I’ve ever had.

During the next 10 years I reacted to one thing after another, including various drugs like paracetomol that I’d used without problems since I was an infant, and innocuous things like chamomile tea and laxatives, plus any kind of bodily manipulation such as massage or osteopathy.

By the time I was 40, almost all drugs were out of the question.

At the age of 44 I started having anaphylaxis to food after having no food reactions before in my life. At the time it seemed random and anything would set the reaction off, though of course I later discovered it was to foods high in histamine.

Avoidance

As my biggest trigger is drugs, on the whole it’s easy to avoid them. Things, however, become more tricky when I absolutely need to take meds, such as having an infection requiring antibiotics or anaesthetic for dental or other procedures. In these situations I avoid drugs I’ve reacted to in the past, and just keep my fingers crossed when trying anything new.

Going on a low histamine diet was an absolute game-changer for me. It took several months for my food reactions to calm down, but now it’s rare I react to something and if I do it tends to be mild and manageable.

I know stress and strong emotions (both positive and negative) cause my mast cells to have a hissy fit, so keeping my life calm, avoiding conflict, and having a strict routine where I eat well and get plenty of rest is massively important.

Treatment

Due to past reactions with supplements I have never had the courage to try Quercetin, Vitamin C or any of the other things recommended for MCAD. I do, however, take a Vitamin D supplement as I’m largely housebound and live in the north of England where sun isn’t exactly at a premium, and iron as my ferritin stores were low. You’ll notice both are in liquid form – I avoid tablets and capsules like the plague.

There are 2 types of antihistamines used in HIT and MCAD:

H1 blockers like cetirizine (Zyrtec), diphenhydramine (Benedryl), Chlorphenamine (Piriton) and loratadine (Claritin) used to treat hayfever-type symptoms, or in the case of Benedryl more acute allergic reactions;

and H2 blockers like Ranitidine (Zantac), Cimetidine (Tagamet) & Famotidine (Pepcid) used to treat reflux, which occurs from an abundance of overly-zealous mast cells in the stomach.

I have had reactions to various H1 antihistamines so am very careful with them. Luckily I have found one liquid brand of H1 antihistamine I can tolerate, but will only take it if I have really troublesome hayfever issues (usually in the spring).

I’ve also had problems with H2 antihistamines. I frequently react to ranitidine, so am currently on famotidine. I have reacted to famotidine in the past too, but after a break have started to tolerate it again – weird, but then that’s my life 😉

Many people with MCAD and/or HIT have a big problem with stomach acid/GERD and in addition to H2 antihistamines I also use Gaviscon liquid which creates a barrier to stop the acid from entering my oesophagus which, trust me when I say, is pure torture.

I have chronic hives and neither H1 nor H2 antihistamines have any effect on them whatsoever. If they become really itchy and bothersome I have to resort to topical steroid cream, which is the only thing that will clear them up.

All the above keep my symptoms at a manageable level and I thankfully have never had to resort to more potent mast cell stabilizing drugs such as sodium cromoglycate, montelukast, ketotifen or similar. I would be petrified to even try them, having had a reaction to both steroid tablets and inhalers, both of which are used to treat acute allergic reactions

Conclusion

MCAD doesn’t conform to what most doctors are taught about allergic reactions. We don’t even have ordinary anaphylaxis, which is driven by an IgE immune reaction, and little is currently understood about the mechanisms which lead to symptoms in mast cell activation disorder.

We are all, also, individual and your reactions and triggers will differ to mine, as will your response and reaction to treatments.

I think the best any of us can hope for is to identify, and avoid, triggers and to work out a treatment plan which keeps the illness manageable, which is no easy feat and can take a long time. I feel lucky that my MCAD has been stable now for a good 5 years which isn’t to say I don’t have symptoms and no longer react to anything, but my reactions are milder and I’ve been able to identify and avoid the things which launch my mast cells into orbit. Long may that continue!

MCAS is a very individual disease. We will all react to different things and to differing degrees but it’s still comforting to read about other people’s experience of mast cell disease and to know we’re not alone.

I can either suffer from the symptoms of one these categories on their own (eg. birch pollen season gives me hayfever but little else), or in combination with other categories, for example drug reactions give me just about every mast cell symptom known to man. My reactions have also changed significantly over my life-time. As a child I had flushing, bowel problems and fatigue but nothing so out of the ordinary that it wasn’t just put down to being normal! As a teenager, once my hormones had kicked in, I added chronic headaches, aura migraines, skin itching and one drug reaction to the mix. By the time I was in my mid-thirties I also had widespread pain, increased urination, oesophageal spasms, severe M.E., severe insomnia, chronic nausea and several drug reactions. And then when I hit my early forties I became almost totally drug allergic, developed food reactions, Histamine Intolerance, hives, hayfever, my hEDS went bonkers and I peed so much I honestly thought my kidneys would pack up!

Here is a list of the things which currently cause my mast cells to behave badly:-

1. Emotions

Emotions are one of my biggest triggers, but the reaction is mild. Being excited brings on a flush, makes my skin itchy and sometimes brings me out in a rash. Being unhappy, particularly if I’ve been crying, does the same but also makes me feel fluey and wiped out afterwards. Arguments are to be avoided at all costs as they always involve not only flushing but also rashes and/or hives and make me hugely brain fogged and exhausted. This is the rash which appeared on my tummy after someone was bitchy to me on a Schnauzer Forum!

Chronic stress, however, is a different kettle of fish. Eventually I will break out in hives, start reacting to foods, develop insomnia, have to get up in the night to pee (sometimes several times), my already poor memory goes to hell on a hand-cart and eventually I will end up bedridden, fluey and exhausted. This is why I need a quiet, structured life with as few surprises as possible.

2. Drugs

I am one of the most drug allergic people I know. From herbs to supplements, painkillers to steroids, anti-histamines to anti-depressants, sedatives to anti-emetics my mast cells reject them all. I have an ocular-gyric crisis to anti-nausea drugs like Stematil, and Grade III anaphylaxis to most of the others (there is currently no universal grading system for anaphylactic reactions but one of the most common is the Ring & Messmer scale which you can see on the Mast Attack site). Here is my facial flushing after a drug reaction:

Unfortunately the reaction doesn’t stop when the drug is out of my system. Mast cell activation can perpetuate mast cell activation and for me the whole thing goes round and round in circles until something eventually breaks the cycle. My longest reaction has been 3 weeks until my heart was so poorly from the constant palpitations I was blue lighted to hospital with a suspected heart attack.

My drug reactions can also make me ill for months afterwards and so weak I’m bedridden. Needless to say I don’t take any drugs, herbs or supplements unless I am so desperate that being potentially bedridden for the next six months is worth it!

3. Hormones

Entering peri-menopause is what triggered my MCAS to go from mild to life-threateningly severe. I’m convinced I was born with MCAS just like I was born with hEDS, but apart from my increasing drug reactions and almost daily flushing it didn’t become really serious until I was 44 and my hormones started to fluctuate. I started reacting to foods, which I’d never done before, developed hay fever, hives, started peeing during the night and my migraines went off the charts. I also stopped tolerating any medication, even things I’d taken for years without a problem.

I’m unfortunately still having regular periods and in the week leading up to The Curse I can have hives, itchy skin, rashes, nausea, widespread muscle pain, am clumsy and my chronic fatigue ratches up a notch or ten.

4. Seasons, plants & animals

I had no idea until I had skin prick allergy testing that I was allergic to Birch pollen and as a result of that also have problems with apples which make my throat and lips tingly and itchy.

I also get an itchy skin rash from fir trees which I discovered when I moved into a house that had several of them in the garden. Needless to say I chopped them all down and now have an artificial Xmas tree!

I had a strong reaction to dogs on skin prick testing but I’ve never noticed any problems being around them – no itching, eye problems, sneezing or anything else, which is brilliant considering I have Bertie! My brother, OTOH, only has to be in the same room as a dog for two minutes and is sneezing his head off and his eyes are streaming. He’s also allergic to horses but not to cats!

5. Insect bites

I did a self portrait photo in a lovely wildflower meadow last week and stupidly forgot to put on insect repellant beforehand. I didn’t realize until I got home and started to itch like a son-of-a-bitch that I’d been eaten alive by tiddly little flying critters and four days on am still having to use steroid cream for the itching, swelling and redness. I have an exaggerated reaction to insect bites, from mosquitoes to gnats, and have ended up in A&E before now just from being nipped by a midgy. The itching is out of all proportion to the size of the bite wound and drives me absolutely bonkers – here is one of last week’s little nibbles on my thigh:6. Hot water

I know, it sounds nuts to be allergic to hot water but sadly I am! I luuurve my baths as they’re one of the few things which help my pain levels, but they do make me itch, itch, itch and I’m zonked afterwards.

I am not, however, allergic to heat per se. I love warm (but not hot!) sunny weather and usually feel my best when the weather is nice!

7. Viruses, Vaccinations and Trauma

Splitting my lip open and having it stitched the other week made me feel rotten for several days as did having a molar removed a couple of years ago. Wounds and trauma, which necessitate an immune response, naturally plays havoc with my mast cells though usually any reaction is short lived and just involves increased brain fog, nausea, muscle weakness, fatigue and generally feeling a bit fluey and not well.

Viruses and bugs are much more serious and can leave me bedridden for weeks or even months. The weird part is, though, that just before I come down with a virus I feel absolutely brilliant. For 24-48 hours 80% of my symptoms disappear and I feel fabulous……….and then the virus hits and I am floored. I can have a variety of reactions to viruses, from simply feeling a bit MEish, fluey and unwell to full on grade III anaphylaxis the after-effects of which can last for months.

Vaccinations, however, are the worst of all. The last jab I had was for travel abroad and it was that which led to me becoming severely affected with M.E. and being bedridden for a decade. One of the immunizations was against meningitis and 5 days later I got meningitis! I also had a measles vaccine as a child and still went on to get measles, though admittedly not as severely as if I’d not had the vaccination. My immune system just doesn’t respond in a normal way to jabs and I will never, ever have another vaccination as long as I live.

8. High histamine foods

While it’s unclear whether my food reactions are as a sole result of my Histamine Intolerance, or whether mast cell activation is also at play, I started reacting to high histamine foods when I was 44 having never had a food reaction before in my life. Within about 20 minutes of eating I’d develop palpitations, my blood pressure would plummet, I’d flush, have oesophageal spasms, retch, pee and pass out – not necessarily in that order. It was terrifying and I became almost phobic to eat anything as I had no idea at the time what was happening. It took nearly a year to discover I had HIT and needed to follow a low histamine diet, which thank God has kept my food reactions at bay. However, during times of mast cell activation my food histamine bucket over-flows much more quickly and I can have more food reactions that I would when my mast cells are calmer. It’s a constant balancing act, especially while I’m menopausal and my mast cells are all over the shop.

9. Alcohol

Although some alcoholic drinks are high in histamine so are a no-no due to my HIT, some are not but I react to them anyway in the same way I react to high histamine foods and some drugs.

10. Doing too much

The busier I am, and in particular the less rest I get, the more reactive I become. I’ve no idea why this should be and it kind’ve sneaks up on me, so I have to be mindful when I’m busy that I can’t keep that level of activity up forever without consequences. Not only does lack of routine, doing too much and not enough rest make my ME worse it also makes my MCAS worse and after only a few weeks I’ll have a hive outbreak, stop sleeping, stop pooping and start peeing like a racehorse. In fact I’m doing just that at the moment, probably as a result of my recent mouth injury, rampant hormones, eating crap (I actually had a frozen pizza last week for the first time in 5 years, just because I wanted one god dammit!) and trying to socialize more than I should due to my current feelings of isolation. My histamine is definitely way up and I really should take more notice of that, rest more and stop eating rubbish.

That’s the bad news, but there is good news too, albeit on a small scale. Since starting a low histamine diet my migraines are less than they were and my almost daily headaches have disappeared completely. My horrendous, intractable, untreatable insomnia has improved dramatically after not sleeping for over twenty years and I rarely now have to get up in the night for a wee. I used to react really badly to smells and fumes, like bleach and hairspray, but for some reason these no longer bother me and despite my exaggerated reaction to insect bites I’ve been stung by a wasp and had no reaction whatsoever. So it’s not always the case that MCAS will continue to progress and there is at least scope for small improvements.

I’ve no idea what will happen once I’m through the other side Menopause. If my hormones are the cause of much of my mast cell madness I’m hopeful of at least some improvement once they’ve finally jogged on which, as you all know, can’t come soon enough. Time will tell.

By the time I developed M.E. I’d had a couple of regular allergic reactions to drugs. The first to anaesthetic and the second to an anti-sickness injection. These were well recognized reactions, if rare, and very different to the weird reactions I’d go on to develop as part of my mast cell disease.

Most Doctors only recognise full on anaphylactic shock, where your throat swells and you have problems breathing, but anaphylaxis can be graded from 1 to 5 (or I to IV depending on the Grading system used) and as my mast cell disease progressed I started having grade 3 anaphylaxis to just about every drug or supplement I put in my mouth.

My very first mast cell reaction back in 1994 was to alcohol, though I didn’t know it was an anaphylactic reaction at the time. My second reaction was to a supplement and this time I was fully aware my body was in meltdown though of course didn’t know why. My Mum, who we are now almost certain has both EDS and MCAD, had quite often reacted badly to drugs so to me it was fairly normal and I really didn’t think much of it.

This exert from my book describes this first serious mast cell reaction. I’d had ME for about 12 months at this stage and was having awful problems sleeping. My GP wouldn’t prescribe anything as she said sleeping tablets were addictive, so I thought I’d try something natural. After all, what harm could it do?

“I swallow the little white pill I’d bought at the Health shop, wincing as it makes its way past my swollen tonsils, the result of yet another throat infection. The tablet contains something called GABA, which is apparently made naturally by the brain and I’d read in a magazine can cure insomnia. I’d eat rat poison if I thought it would help and as I pull my sleep mask over my eyes and push in my earplugs, shutting out all external stimulation, I offer up a silent prayer for seven hours of heavenly uninterrupted kip.

Twenty minutes later far from being in the land of nod I’m starting to feel a bit peculiar. My whole body is tingling and I feel hot, ridiculously hot, so with an irritated sigh I sit up and turn on the bedside lamp, crawling forward on the bed so I can see myself in the dressing table mirror. I’m shocked to find an ashen face with flaming cheeks staring back at me and I can see my chest inside my pyjama top is mottled scarlet red. Hmmmm. My sleepy brain is just starting to register that something’s not quite right when every nerve in my body explodes with pain, pricking my skin with a thousand razor sharp needles.

Owwwa! What the hell?! I’m wide awake now and more annoyed than worried, realizing my chances of some shut eye are diminishing by the second, but as I try to exhale my frustration I’m kicked in the chest by an imaginary horse, the thump of its hooves a physical blow which steals every ounce of air in my lungs. The sensation is so real I slump over, my heart suddenly pounding ferocious beats which thud in my ears and all the while I get hotter and hotter until fire reaches my brain, a raging inferno which melts everything in its path.

Conscious thought is lost to the blaze and I hug my head protectively with my pyjama clad arms, rocking back and forwards to soothe the onslaught. I’m obviously having a bad reaction to the GABA but it’s nothing like the allergic reactions I’ve had to anti-sickness drugs, which made my eyes roll in my head, or the reaction I had after my spinal surgery as a kid which caused my muscles to spasm so violently my back arched inches off the bed. No, this is something new and I have no idea what’s happening.

I’m weirdly calm yet antsy with a sudden unstoppable urge to move, despite the fact my body is heavy with fatigue, so I start pacing the length of my bedroom, my heart battering against my ribcage, pain tunnelling along every nerve with each thudding step. I’m not liking this God I tell my invisible Mentor, not liking it one little bit. In fact, I’m freaking out so if you feel like a bit of Divine Intervention now would be a really good time. God’s answer is to make me abruptly nauseous and I only just reach the bathroom before vomiting so violently I’m worried my stomach will rupture.

Three hours later I’m still pacing, a rhythmic voyage round the bed and back keeping my adrenalin fuelled body occupied while my heart does the equivalent of a sprint hurdle, my trudge broken only by the need to retch stringy bile into the toilet bowl. Please make it go away God I beg. I’m so tired, so very very tired and my tummy hurts. My knees buckle and I stumble but despite overwhelming exhaustion I keep moving because when I stop the fire in my veins is so intense I don’t know if I can bear it. It doesn’t cross my mind to dial 999 because it’s the middle of the night and anyway I hate hospitals and would only want to go to one if I were dying. Which I’m not. At least, I don’t think I am. Corpses have to lie down and be dead and I’m far too wired to be that still.

I shiver uncontrollably, fat goose bumps lifting the hairs on my arms, but when I catch a glimpse of myself in the mirror my face is still alight with burning heat. I wrap my arms round my ribcage, hugging myself for both warmth and comfort, then try some of the breathing the hypnotist taught me, in through my nose and out through my mouth, in a vain attempt to quieten my thudding heart. It doesn’t work and I become so out of breath I see stars.

‘For crying out fucking loud!’ I stamp my foot hard on the laminate floor, angry that everything I try only seems to make things worse, then instantly regret my strop as searing pains shoot up my leg, sending shock waves rippling up my spine. ‘And you can piss off as well!’ I tell the pain petulantly.

Indeterminable hours of pacing and puking later, as the streetlights are replaced by weak winter sunshine, the fire in my brain finally dies to glowing embers and my heart, after one final thumping finale, settles into its usual quiet, steady rhythm like nothing has ever happened. Not quite trusting that the reaction might finally be over I sit tentatively on the edge of the bed waiting for my nervous system to complain, but although every inch of my skin is tingling like it’s plugged into the electric the sensation is just uncomfortable rather than agonizing. Relief and crushing exhaustion suck the last ounce of strength from my muscles and I crawl gratefully between the sheets, my brain singed, my stomach raw, blissfully unaware I’d just had the first skirmish in a twenty year war with my immune system which would ultimately try its best to kill me.”

I started this blog in April 2013, just over two years ago, so I thought it was a good time to have a look back at how my mast cell disease and HIT has fared.

I was diagnosed with HEDS in 2010 and my mast cell disease exploded in spring 2012 (although I’d had increasing symptoms for over a decade before that), with acute anaphylactic events after every meal, sometimes even after drinking water. After much research I was convinced I had MCAD as a resut of my Ehlers-Danlos, and began a low histamine diet. After four months the anaphylaxis stopped and the relief was enormous. I also began to sleep better and stopped getting up every single night to pee which I’d been doing for several years, sometimes multiple times a night.

I had horrendous reflux, however, and in August of that year plucked up the courage to try H2 antihistamines. I initially tried Zantac but it actually made my reflux worse and gave me awful brain fog to boot, so I switched to Tagamet (Cemetidine) which I was amazed to find I tolerated well and which greatly improved the reflux. It also helped my chronic daily nausea and my upper back pain, which we think was due to acid burning the back of my oesophagus.

I saw Dr Seneviratne in December 2013 and received my official HIT and MCAD diagnoses. He advised adding in an H1 antihistamine and again I was delighted to find I could tolerate Zyrtec liquid (Ceterizine). I thought it would help my sore eyes, daily sneezing and hives but sadly it had no effect. What it did do, however, was help my period pain which has been excrutiating my whole life. It also helped my stomach cramps and pain, helped with brain fog and improved my nausea even further.

I ticked along for the next 12 months. I still had occasional mild reactions to random foods for no apparent reason, and sometimes felt weird after taking my H2 antihistamine, but all in all things were fairly stable. Until Christmas 2014 when I realized the reactions after taking the Tagamet were getting worse and I had a full on anaphylactic event at the beginning of March this year. I had to stop taking it and, despite trying other brands, couldn’t find another I could tolerate. I also tried three different PPIs, eg omeprazole, and couldn’t tolerate those either.

For the first few weeks without the H2 my reflux was dreadful and the pain was hard to live with. Thankfully, though, it’s settled down now and is at least bearable most days. My nausea, on the other hand, is horrendous and as I type this I just want to puke. In fact, I probably will as soon as I’ve eaten my breakfast because eating anything makes me sick as all hell. I’m allergic to any of the drugs that might help this, so it’s pointless even discussing it with my GP. I’m also not sleeping as well as I did, and my upper back pain is really troublesome.

I’m also back to reacting to foods. The food doesn’t seem to matter, it can be any random thing. One day I’ll react to shepherd’s pie, the next day I won’t. One day I’ll react to risotto, the next day I won’t. The hour after I’ve eaten anything is pretty miserable, with severe nausea, stomach cramps, blood pressure fluctuations, and just feeling ‘weird’ and not well. It’s really starting to get me down, as I don’t know what to do about it. I’m still on my diet and I can’t tolerate drugs of any description so I’m not sure where to go from here (if anywhere).

Then last month I had a reaction after my H1 antihistamine, so I’ve had to stop that as well. I now feel more fatigued, brain fogged and more MEish/fluey than usual. As you all know, I also had the worst period I’ve had in forever this month which I’m sure is related.

Dr S did give me a prescription for Sodium Chromoglycate but I haven’t tried it for two reasons: the first is that several of my friends have tried it and it’s made them feel dreadful; the second is that, even if I tolerate it now, you can guarantee that at some stage in the future I’ll become allergic. It’s been that way with every drug I’ve tried in the past twenty years – I tolerate it for so long then, bam!, my body rejects it. Bearing that in mind I really can’t see much point in even starting it.

So, things are pretty miserable at the mo and quite scary if I’m honest. I wish I had better news for you all. I have no idea why I’ve gone downhill again and don’t know if things are going to settle down, get worse or stay the same – I guess only time will tell.

I’m starting with some good news for a change. After 9 months of problems my hips finally seem to have settled down. I am now able to walk without pain and even bending and twisting in the garden every day this week hasn’t bothered them – I am one happy chick 🙂 . They are, and probably always will be, stiff and I’m resigned to never again being able to sit cross-legged or sleep in my usual comfortable position, but the nagging, shooting, stinging, aching pain has gone and for that I am truly thankful.

The other good news is that I’m still managing without any H2 anti-histamines for my GERD after I became allergic to the tablets I’ve been taking for the past 2 years. The first couple of weeks were really tough, with incredibly painful rebound acid production, but this seems to have settled down to a mild/moderate pain which I’m hoping to just be able to live with. It’s not pleasant, but it beats the anxiety of popping a pill every day and wondering if all hell is going to break loose. The biggest downside of having reflux is the godawful taste in my mouth, which makes me self-conscious that I have bad breath when I’m talking to people .

The bad news (you knew there’d be some 😉 ) is that since my drug reaction my mast cells have been super twitchy and I’m having some mild reactions every time I eat. Mild tachycardia, anxiety, sudden low mood and mild stomach cramps, plus pins & needles in my bum and persistent nausea. Luckily they only last about 10 minutes (well, apart from the nausea which I sometimes have all day) so I’m coping, but it’s not fun and I hope it all settles down again soon. I’ve found in the past that once I’ve had an anaphylactic episode my mast cells can become super alert for months, so the reactions aren’t unexpected. I’m not reacting to any food in particular, so I’m thinking the culprit is the act of digestion itself which produces histamine and being as though my histamine bucket is obviously already full the digestive histamine is causing problems.

On the plus side my butt hive outbreak has cleared up, my sleep isn’t as disrupted and my constantly runny nose has calmed down a bit, so I’m hopeful this latest flare is on the wane (famous last words!).

I have a very exciting week ahead as Wednesday is our Camera Club’s Annual Dinner and presentation night. I’m receiving a trophy for winning the Millennium Cup Competition, and also found out this week I won Beginner’s Digital Image of the Year with the same picture 🙂 . It’s the first time I’ve been out for dinner in the evening for………actually I can’t remember the last time, maybe my 40th birthday seven years ago. I just hope adrenalin keeps me going and I don’t react too badly to my meal! I’ll let you all know how it went.

As anyone who’s read my blog will know, my biggest mast cell reaction is to drugs. There is barely a single drug I can tolerate: from aspirin to valium, anti-emetics to steroids I’ve had anaphylactoid reactions to them all (if you want to know what my reactions are like read this post).

Due to my mast cell disease, and a hiatal hernia due to my Ehlers-Danlos, I have rampant GERD. And I mean rampant. To the point where the acid burns my oesophagus and causes ulcers, and I inhale it into my lungs and give myself walking pneumonia. The pain of severe GERD is like nothing on earth. To be burned with acid from the inside is not fun. The pain in my back gets so bad I can’t sit upright and it radiates down both arms to my elbows. My throat and mouth also become burned and the taste is so vile I can barely stand it. I feel like my entire upper torso is on fire. And before anyone tells me to stop eating gluten or dairy because it cured their reflux PLEASE don’t – I’m liable to tell you to shut the fuck up, you have been warned. Not eating wheat will not cure my hernia, which is due to shitty collagen rendering my oesophageal sphincter defunct.

To control my reflux I have been able to take Cimetidine, an H2 antihistamine which blocks stomach acid. I tried Zantac, the first drug of choice, but it didn’t agree with me and gave me awful brain fog (worse than usual, and it’s already bad enough). But I’ve been taking 4 tablets of Cimetidine daily for the past 18 months and it’s kep the GERD at bay. Until this week.

I knew that, eventually, I’d become allergic to the Cimetidine. It’s been my biggest fear. I become allergic to any drug I take over the long term.

I’ve been having small reactions after taking the Cimetidine for about a month now (pins & needles in my bum, crampy stomach) and just ignoring them, hoping they’d go away. They didn’t. They escalated on Monday to an all out anaphylactic reaction, with a heart rate of 125 and a bp of 145/75 (my usual bp is 118/55). I gave it a miss for a couple of days, hoping things would calm down but no such luck. I can no longer take the Cimetidine.

Ages ago, my GP had given me a Proton Pump Inhibitor to try – Omeprazole. I still had it, and it was still in date, so this morning I gave it a try. Just a teeny tiny bit on the end of my tongue – what harm could that do? Anaphylactic reaction is the harm that could do, with sky high bp and heart rate, and cheeks so red I could light up my entire village (I took it 4 hours ago and am still flushed). Fuck.

As I’ve had no drugs all week, my GERD has had a field day. The pain is worse than anything I’ve ever had to endure. I can’t live with it. Suicidal thoughts plague my every waking moment.

I’m speaking to my GP in the morning, but realistically what can she do if I can’t take any acid reducing medication? I swill Gaviscon like it’s water and it does not help one iota.

I’m super depressed as you can imagine. I’ve lived with this shit for over 20 years and I’m just exhausted from it all. I live every day with the fear of what I’ll react to next and it’s just so tiring. I’m always allergic to anything which might help me.

Needless to say I won’t be writing much on here until I can get things under control. I tend to just go into myself when I’m going through a bad patch and don’t want to to be online and ‘chatty’. And it’s not in my nature to come online and whinge – it doesn’t help me and you all have your own woes. So this is me saying you might not hear from me for a bit. I’ll be back when I no longer feel like slitting my wrists in the bath (a thought which enters my head on an hourly basis).

Jak x

p.s. before I go, I’d planned on sharing a book with you in my next post, so I’ll share it in this one instead. ‘Girl in the Dark’ by Anna Lyndsey is the true story of a woman who suddenly becomes allergic to light. Not just sunlight, all light, and lives in a completely dark room. No laptop, no TV, no sunlight, no moonlight, no fresh air from an open window………..just total blackness. It’s recently been serialized on BBC radio for those who can listen online http://www.bbc.co.uk/programmes/b0540b3h but is also available to buy in hardback or Kindle download from Amazon. There’s always someone worse off than you……

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Hi. Thanks for visiting my Blog. Posts are listed newest first, but if you’d like to start with my first rambling written in 2013 click here. I’m not a mast cell or EDS expert and have no medical training. I’m just sharing my own personal thoughts and journey. This isn’t a forum, more a diary, but polite, respectful comments & questions are welcome – click the ‘leave a reply’ link under post titles or scroll to the end of each post and use the comments box.

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